Hey peeps hope you are all keeping well. I’ve been meaning to write this post for a while now but have been caught up with family life and the trials and commitments that come with being a Dystonia sufferer. It’s been a good few months since I updated you on my progress and it’s hard to know where to start as so much has happened!
I think the biggest progression since my last update is the transfer of my care. As many of you may be aware a move to a hospital more local to me has been in the pipeline for a while, ever since I underwent my DBS operation, but the changeover has moved particularly quickly as of late.
My first appointment with my new neurologist didn’t go all that well to be honest. We arrived full of hope and waited over an hour to see him to then be told, after a brief introduction and vague chat, our appointment would have to be rescheduled because he hadn’t received any of my notes. This didn’t come as any surprise as it’s something I have experienced time and time again but never the less it was really frustrating.
We fully understood and supported the reason behind the move as yes in the long run it would be more practical to have my treatment closer to home. But we were very clear right from the onset of the move that we wanted the transfer to be as quick and smooth as possible. Something that we we’re assured would happen. And in all honestly it did make me question whether it was worth all the bother.
But after a more recent appointment with a fellow neurologist and my DBS consultant my faith has been fully restored. They were just so lovely! They discussed how best to move forward with my care and were keen to get thing moving again. It was thought to be worth involving a neurological rehabilitation specialist as the issues with my feet are now one of the next priorities. So a referral to him and a pain specialist also based at the same hospital have been made.
From a treatment point of view everything apart from physio has come to abit of a standstill. Something I had hoped with a smooth transition would have been avoided.
Small and steady improvements have been seen with DBS but nothing too significant to most as of yet. I’ve had very few tweaking sessions since the device was implanted compared to other sufferers which I’m presuming is down to living a fare distance away from where my old DBS team were based. Now that I’m closer I hope to be seen more regularly. Today I will meet my new DBS nurse for the first time so I’m keen to discuss this issue and see whether this will be an option. Hopefully it is and I will soon see the desired effects I had hoped for 18 months in.
Never the less though I am very grateful for the progress I have seen. DBS has definitely had a positive impact on my day to day living and independence! Those simple everyday activities such as running errands, walking the dog or in my case picking my nephew up from school are no longer troublesome or complicated. The time between my spasms has continued to improve meaning my mum is now able to cook meals and we’re able to eat them without the interference from my spasms. My legs are also now able to withstand light movement! Something before DBS was almost impossible! So overall I’m keen not to be too disappointed.
Continuing on a positive note I’ve also had three lots of eight session of Hydrotherapy which has been great! Not only do I love being submerged in the water my movement in the pool is so much more fluent. My legs feel more supple and are generally more comfortable and easier to move. I am able to trail things which on land would be impossible right now for instance walking despite the issues with my feet! And believe it or not, even after all this time, I still have a walking reflex!
The main objective behind my pool session are to stretch and strengthen my muscles but to have been able to carry out what may seem like something quite simple to most has just been fantastic and really uplifting!
Again I apologise for my absents but as you can see I have had a busy few months. Hopefully now the ‘Big Move’ is almost complete things will begin to settle again. I’m really optimistic about what’s to come and look forward to getting to know my new team and moving forward with this new chapter.
As always lots of love to you all